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Home Page of AHCSIOS, the Ad Hoc Committee for Solving the Intractable Organ Shortage Proposal submitted to the U.S. Congress May 19, 2003 Dear Honorable Senator/Congressman, The problem is simple and stark. While transplant surgery has become progressively more routine, every year tens of thousands of organs (50 to 75 percent of those potentially available) that could restore the health and prolong the lives of Americans are instead being taken to the grave, unutilized. At the same time, about 6,000 Americans die each year while waiting for organs that never arrive, in most cases after years of incredible suffering endured by themselves, their families, and their friends. Were the failure to retrieve these vital and irreplaceable organs the result of deeply felt religious or cultural beliefs, we would not be writing to you. It is not. The only thing that stands in the way of retrieving these organs and saving many thousands of lives each year is a failure of the collective imagination - a failure to devise a policy that, while respecting traditional social norms, provides an increased incentive for cadaveric organ donation. We believe we have a compromise plan that both comports with human dignity, and constitutes the tiniest imaginable step toward utilizing the power of financial incentives to bring the supply of cadaveric organs up to meet the demand. All available evidence suggests that such incentives will be as effective in this sphere of human need as they are in supplying all other products and services that we value. Please note that we are not proposing any change in the current system of organ allocation. We write to you as a diverse group of academics from the legal, economic, philosophic and scientific communities who have written and spoken on this question over the years. Also joining us are transplant surgeons and leaders of Organ Procurement Organizations (OPOs) with many years of experience on the front lines of organ procurement. Our ranks also include actively interested citizens and religious and civic leaders. We are all persuaded that a properly designed system of financial incentives for cadaveric organs is likely to have a powerful salutary effect on alleviating human suffering, and we think the time has come to begin pilot studies of such a system. We offer a consensus proposal that, we believe, will result in an almost immediate and substantial increase in the rate of cadaveric organ donation. We believe it constitutes the most viable compromise between using the power of market forces to satisfy human need while at the same time recognizing the widespread reluctance to having human body parts being treated, undignifiedly, as commodities. The proposal involves the partial lifting of Public Law 98-507, Title III, Section 301, the section of the National Organ Transplant Act of 1984 forbidding financial incentives, insofar as it applies to cadaveric donation. Specifically, we propose that Congress instruct the Secretary of the Department of Health and Human Services to initiate demonstration projects of a policy that rewards the estates of brain-dead donors with a set donation of, for example, $5,000, for the decision of their family to give the gift of life. This policy would be instituted by the currently existing OPOs. The gift could be used to help pay for funeral or hospital costs, as a donation to the deceased's favorite charity, or could simply remain with the estate. We even propose specific language the OPO personnel could use, after their normal humanitarian appeal, in order properly to convey to families the nature of the decision they are being asked to make and of the gift they are being offered:
A crucial aspect of the proposal is that the gift be a set amount that is given to the estates of all brain-dead patients who are judged to be good donor candidates, and whose families do indeed donate. There should be no possibility of unseemly haggling. Neither should there be any reduction of the amount of the gift if a presumptively good donor turns out to have few or no usable vital organs. We think this approach would avoid, as much as possible, any slippage from a system that maintains human organs in a category wholly separate from all other, more mundane, commodities. A second crucial aspect of the proposal is that the amount of the gift be large enough so that the family members do not feel as though the memory of their loved one is being insulted or their loss trivialized, or that they are being asked to allow themselves to be taken advantage of, especially in the hospital environment, where surgeons and top hospital administrators are known to make high six-figure salaries. We feel that $5,000 is a round and respectful sum that tangibly conveys a sense of the grave importance we as a society place upon the decision the family is being asked to make. In any case, we do not think the fixed gift amount should be less than $3,000. This proposal is, we believe, the smallest and most effective step that can be taken away from our current system, which relies purely on altruism, to a policy that allows something of a quid pro quo - a reward for community service, much like the death benefits that currently are provided to the families of service personnel who die in the line of duty. We note that if our proposal is successful in doubling or tripling the rate of cadaveric organ donation, as is well within the realm of possibility, our nation's deadly organ shortage would become a life-saving surplus, the growing problem of black market payments for living organ donation would largely disappear, and surgeons would have much less occasion for compromising their Hippocratic oath by endangering the lives of healthy donors. Additionally, we note that if the project is successful, it will eventually more than pay for itself in terms of reduced dialysis expenditures by the federal End-Stage Renal Disease Program. As you may also know, the American Medical Association, at their 2002 annual meeting, advocated experimenting with allowing compensation for cadaveric organ donation. The American Society of Transplant Surgeons and the United Network for Organ Sharing – the organization that operates the organ allocation system in the United States – have made similar proposals. But, none of these proposals can proceed without someone in Congress taking charge to amend current law. If, as we fervently hope, you do wish to redress this tragic situation, we are available to meet and discuss it with you or your staff at your convenience. Every moment we delay, more untold suffering occurs and more Americans die needlessly. The time to act is now. Sincerely, Signed (in alphabetical order)
We have designated Dr. Alex Tabarrok, who lives in the Washington D.C. area, and Dr. Thomas Peters, from Jacksonville Florida, to be our contact people. But please feel free to contact any of us. (End, lobbying letter) List of Senators, Congressmen, and others the
letter was sent to: U.S. Representatives (in alphabetical order) Representative Charles F. Bass, New Hampshire, 2421 Rayburn House Office Building,
Washington, DC 20515 (202) 225-2946 Secretary Tommy Thompson, Secretary, U.S. Department of Health and Human Services, 200 Independence Avenue, S.W., Washington, DC 20201 (202) 619-0257 Wednesday, May 28, 2003 FOR IMMEDIATE RELEASE
Lobbying Effort Targets Organ Shortage Broad-Based Group Calls for Test of Financial Incentives "Current law forbids even the partial reimbursement of funeral or hospital expenses to families whose gifts literally mean the difference between life and death for the over 80,000 individuals currently in grave need of an organ transplant," said George Mason University Law School professor, Lloyd Cohen. "That 1984 congressional ban was intended to prevent poor people from selling a kidney while they were still alive, but unintentionally put a lid on the supply of organs from brain-dead patients, resulting in tens of thousands of needless deaths and untold suffering since the law was implemented." David Kaserman, Torchmark Professor of economics at Auburn University, and another group member, has noted that this overly-broad prohibition is the worst bit of public policy he and his colleagues have seen in over 25 years of study. "And, despite decades of public information campaigns and billions of advertising dollars spent, the number of cadaveric organ donors in the U.S. has remained essentially unchanged for over 13 years. It’s time to undo the damage, partially rescind the law, and try a limited market approach, in which monetary rewards will be used to increase the supply." Also a member of the group is Dr. Thomas Peters, transplant surgeon and head of the
Jacksonville Florida Transplant Center. "We believe that a substantial death
benefit payment will save lives that are now tragically being lost. Financial incentives
should be studied in well-controlled and appropriately designed trials. That’s all
we’re asking – that this approach be given a try." According to Dr. Peters, "a crucial aspect of the proposal is that the gift be a set amount that is given to the estates of all brain-dead patients who are judged to be good donor candidates, and whose families do indeed donate. There should be no possibility of unseemly haggling. Neither should there be any reduction of the amount of the gift if a presumptively good donor turns out to have few or no usable vital organs." This point was echoed by the group’s organizer, University of Pittsburgh neuroscientist Harold Kyriazi: "We’re sensitive to peoples’ concerns about commoditization of the human body. We think this standard death-benefit approach will, as much as possible, act to maintain human organs in a category wholly separate from all other, more mundane, commodities. It’s a reward for community service, much like the death benefits that currently are provided to the families of service personnel who die in the line of duty." Other signatories include noted University of Chicago Law School professor Richard Epstein, economist Alex Tabarrok of George Mason University, medical ethicist Gregory Pence of the University of Alabama at Birmingham, transplant surgeons John Fung of the University of Pittsburgh School of Medicine, Baburao Koneru of the New Jersey Medical School, Robert Sade of the Medical University of South Carolina, and religious leaders from Baptist, Greek Orthodox, Jewish, and other denominations. The group hopes that the knowledgeable and broad consensus they represent will encourage Congress to enact their proposal. They believe it to be "a compromise plan that both comports with human dignity and constitutes the tiniest imaginable effective step toward utilizing the power of financial incentives to bring the supply of cadaveric organs up to meet the demand." As such, the group hopes that Congress will find little political capital to be lost, and much to be gained, in championing the proposed change in law. Specifically, their proposal involves the partial lifting of Public Law 98-507, Title III, Section 301, the section of the National Organ Transplant Act of 1984 forbidding financial incentives, insofar as it applies to cadaveric donation. The American Medical Association, the American Society of Transplant Surgeons, and the
United Network for Organ Sharing – the organization that operates the organ
allocation system in the United States – have also proposed studying the use of
financial incentives to increase the supply of donated organs. Contacts: or
Tuesday, June 10, 2003 FOR IMMEDIATE RELEASE Group Responds to
Congressional Hearing on Organ Shortage Supports
UNOS’ National Organ Donor Registry Approach, But Says Tests
of Financial Incentives Also Needed The June 3rd hearing, titled “Assessing Initiatives to Increase Organ Donations,” was organized by Representative James Greenwood of Pennsylvania and held under the auspices of the House Subcommittee on Oversight and Investigation. One of the invited speakers was the group's Dr. Robert Sade of South Carolina, who was there to communicate the American Medical Association’s position that the time has come to begin trials of a new approach, involving the use of financial incentives. Dr. Sade is a cardiothoracic surgeon, a member of the AMA’s Council on Ethical and Judicial Affairs, and the medical director of the Organ Procurement Organization of South Carolina. (All of the speakers’ prepared statements are now available on the government website, at: http://energycommerce.house.gov/108/Hearings/06032003hearing946/hearing.htm - Hearing Webcast:) In his prepared statement, Dr. Sade said, “Currently, there are no data showing whether modest financial incentives-- such as direct payments to families, tax credits, funeral reimbursements or charitable contributions -- would increase or decrease the supply of organs. Almost all of the arguments against financial incentives are based on assumptions that could be proven or disproven by scientifically designed studies. Factual evidence could determine the presence or absence of harm to individuals, groups and society, and resolve many of the policy debates about financial incentives. Therefore, the AMA supports studying the impact of moderate financial incentives and other motivators on cadaveric organ donation.” The AMA’s recommendation is much more general than that of the group, which recently made a specific proposal to Congress for trials of $5,000 death benefits that would be paid to the estates of deceased donors, which “could be used to make a donation to the deceased’s favorite charity, to help offset hospital or funeral costs, or simply to remain with the estate.” (The proposal may be found by clicking on “Proposal to Congress” at http://www.organgiving.org.) Dr. Sade’s frustration with the status quo was evident during the question-and-answer portion of his testimony when, under intense cross-examination from Congresswoman Diana DeGette of Colorado, he repeatedly emphasized that the AMA’s main concern in advocating trials of financial incentives was for the 6,000 victims who die tragically each year amid much suffering while waiting for organs that never arrive. Ms. DeGette, on the other hand, said she was “very much opposed to even doing a study on that idea,” and that “I would be appalled by any legislative effort to change our long-standing policy.” Dr. Abraham Shaked of the American Society of Transplant Surgeons and Dr. Francis Delmonico of the National Kidney Foundation also expressed concerns that such incentives, unless carefully administered, might be ethically offensive. Dr. Sade responded to their comments, saying, “We heard them talk about how putting money into the equation places a value on human life, and that somehow this doesn't feel right, that this is repugnant in some way. Well, the other side of that is, they're also putting a value on the human life of the potential recipients who will never get those organs, and the value [they place] in that case is very low. … Well, I beg to differ with that. I think that the lost lives are very important.” He later added, “I think that the first business of physicians and federal legislation supporting the healthcare system is to make sure that as many patients live as possible, within the bounds of ethical behavior and ethical means. And there’s no reason why we can’t design studies that meet ethical standards that do involve financial incentives.” Another concern raised during the hearing against the use of such incentives was expressed by Dr. Delmonico, who feared that even something so innocuous as a standard death benefit paid to the estates of the deceased would inevitably be sensationalized in press headlines as “Government To Buy Organs,” possibly resulting in a public backlash and a counter-productive reduction in organ donation. Group members counter that this is why they’re only proposing trials – to obtain the data necessary to make an informed decision. Said Dr. Sade during his testimony, “I personally don't worry much about headlines. I worry a lot more about the 6,000 people dying every year. … We can get past the headlines.” In perhaps the hearing’s sharpest exchange, Congressman Greenwood grilled Dr. Delmonico during the Q&A period, saying, “You indicated something to the effect that it would be impossible for people to distinguish between financial incentives that went to a decedent’s estate vs. buying an organ from a living person. I want to challenge that assertion, because I think that people don’t have a lot of difficulty making a discrimination between somebody who’s alive and somebody who’s dead. No one I know of is advocating a policy where we’d actually pay someone to donate, say, a kidney while they were alive.” Dr. Delmonico responded, “We agree – we’ve got to get people to sign up. You have expressed this morning your desire to do this in such a way that applies financial incentive. The issue is how you go about it. … But we both agree, let’s get folks to sign up.” Greenwood: “But if I may, it seems to me that for the years I’ve been interested in this subject, I’ve heard a thousand times, ‘Let’s get more people to sign up,’ and yet we have a flat line. Nothing has made a significant dent in the number of donors.” Delmonico: “Yes sir, that’s true, but Dr. Metzger’s proposal hasn’t been tried.” Dr. Metzger’s proposal involves establishing a National Organ Donor Registry, adoption of ‘best practices’ by Organ Procurement Organizations, raising pay for organ procurement coordinators to reduce their turnover rate, and having organ procurement coordinators in hospitals at all times. “And herein lies the heart of the debate," said group organizer, Harold Kyriazi, a neuroscientist at the University of Pittsburgh School of Medicine. "After thoroughly digesting the hearing testimony, our members are in full agreement that these reforms are a step in the right direction, but will not alleviate the organ shortage unless implemented in conjunction with financial incentives for organ donation." "We regard such changes as welcome and beneficial, in that they promise to improve the communication of the wishes of the deceased to the family, and to remove from the family the burden of making that difficult decision at that most devastating time, when they have only recently learned that their loved one is brain-dead. But while these changes certainly promise to improve the yield of organs from those who have previously volunteered to be donors, they likely would not result in an increase in the number of such volunteers." "For that, one would need something like the incentives described by one of the hearing’s other speakers, Richard M. DeVos, the billionaire co-founder of Amway, and himself a 1997 heart transplant recipient. Mr. DeVos has worked with his staff and experts in the organ donation field to come up with a plan to end the shortage by offering a potential $10,000 tax benefit or $10,000 life insurance-like policy to the estates of people who pledge to be organ donors if the opportunity ever arises." "We agree with Mr. DeVos, and regard the use of such financial incentives as a necessary component to saving lives under the UNOS National Organ Donor Registry approach. But even with the DeVos-type incentives, it will likely take many years to sign up the needed tens of millions of additional donors. Therefore, for several years at least, our nation will continue to have to rely upon the more problematic practice of approaching families in their time of grief. And for that, our group feels strongly that the time has arrived for Congress to instruct the Department of Health and Human Services to begin implementing scientifically designed trials of financial incentives for cadaveric donation at several Organ Procurement Centers around the country. Such trials offer the hope of doubling or even tripling the donation rate virtually overnight. If the trials prove that financial incentives work, the approach could then be implemented around the country, saving tens of thousands of additional lives in the process. We owe it to the sickest and most needy among us to at least try.” Finally, the group issued the following statement: We
wish to dispel the often-heard argument that introducing money into the equation would
somehow diminish human dignity and devalue human life.
Our nation has a long-standing tradition of paying death benefits to the families
of servicemen who die in the line of duty, and that does not “place a dollar value
upon human life.” Just as a serviceman’s death benefit is not an attempt to pay
the family for their lost loved one, but a token of appreciation, the $5,000 death benefit
we are proposing does not place a value on human life, but affirms the importance and
dignity of the sacrifice that a family is being asked to make. It is a “thank
you” gift for an act of community service that can save the lives of up to eight
other members of society, and benefit countless others. By
contrast, we find nothing morally uplifting in the reward for organ donation being
forcibly set at zero dollars. The group added that they “applaud the heroic efforts of Congressman James Greenwood of Pennsylvania on this issue, who organized and chaired the June 3rd hearings. We also commend his open-minded, and pragmatic yet principled attitude. We fervently hope that a majority of his colleagues will be of a similar frame of mind. We fear that unless a majority joins with him in being willing to fund studies of the use of financial incentives, the heart-rending statistics will continue, and almost 60% of the more than 81,000 Americans currently waiting for life-giving organs will die before receiving them.” The group’s progress may be tracked at
their web page, which may be reached at www.organgiving.org,
and clicking on “Proposal to Congress.” The website contains the full text of
their letter to Congress, all press releases, a list of all the letter signers and their
contact information, a list of those in Congress who have received the letter, and will
soon have a summary of media responses as well as answers to common questions and
criticisms. Spokepersons:
or
Wednesday, June 11, 2003 FOR IMMEDIATE RELEASE Organ Shortage Lobbying
Effort Intensifies Members go on offensive with
media appearances; Ad hoc group adopts a name Spokespersons:
or
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